HIV-Related Stigma and Knowledge in the United States: Prevalence and Trends, 1991-1999

From CDC National Prevention Information Network

April 8, 2002

People with AIDS (PWAs) and the social groups to which they belong have been stigmatized worldwide since the epidemic began. Stigma has interfered with effective societal response to AIDS and has imposed hardships on PWAs and those around them. Fear of stigma has deterred individuals from being tested for HIV and from disclosing seropositive status to sexual partners, family and friends.

This report examines AIDS-related stigma in the United States, using data from surveys of US adults in 1997 and 1999. The researchers also examined data from the present study in conjunction with previously reported findings from a comparable 1991 survey. Telephone surveys with national probability samples of English-speaking adults were conducted between 1996 and 1997 (n=1,309) and 1998 to 1999 (n=669). The Survey Research Center at the University of California-Berkeley conducted all interviews for both surveys using their computer-assisted telephone interviewing system.

Questions were included about support for stigmatizing AIDS policies (quarantine, publicly identifying PWAs); support for mandatory testing (of pregnant women, immigrants and people perceived to be at high risk); attributions of responsibility and blame to PWAs (the belief that PWAs are responsible for their disease, that they deserve it); beliefs about PWAs (that they do not care about infecting others); affective responses to PWAs (anger, fear, disgust); and discomfort with and avoidance of PWAs in hypothetical situations (having one's child in school with a PWA, working with a PWA, patronizing a grocer who has AIDS).

In the resulting answers, the researchers found trends "both hopeful and disturbing...." Fewer than one in five adults still supported punitive measures like quarantine and public identification of PWAs by 1999. However, also in 1999, one-fifth of those surveyed still feared PWAs, and one-sixth expressed disgust or supported public naming of PWAs. Roughly one-fourth of respondents in 1999 felt uncomfortable having direct or symbolic contact with a PWA. Nearly one-third of respondents said they would avoid shopping at a neighborhood grocery store whose owner had AIDS.

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The proportion of adults who believed that a person infected with HIV through sex or drug use deserves to have AIDS increased over the decade, peaking in 1997. When the question was framed less harshly, approximately one-half of respondents perceived PWAs to be responsible for their illness. "In the case of AIDS, such perceptions may be an unintended consequence of public education campaigns that stress the importance of personal decision making in HIV prevention. If so, health educators face the challenge of communicating the importance of protecting oneself from AIDS without promoting increased blame for individuals who become infected," according to the researchers. Of further concern: the proportions of respondents overestimating the risks posed by some forms of casual social contact were higher in 1997 and 1999 than in 1991.

The authors concluded that their findings point out at least two important implications for public health. "First, they suggest that AIDS education efforts have effectively communicated how HIV is transmitted but have been less successful in convincing the public that AIDS is not spread through casual social contact. ...Second, public health policy should recognize that AIDS stigma persists in the United States. ...Given that these respondents represent a large number of adults, it is understandable that many PWAs fear the consequences of stigma when their diagnosis becomes known to others. Such fears are likely to have detrimental effects on PWAs and persons at risk for HIV. They will also affect the success of programs and policies intended to prevent HIV transmission. Thus, eradicating AIDS stigma remains an important public health goal for effectively combating HIV."

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